The penalty of being disabled

I am 41 years old. Five years ago, while sitting in an orthopedic office, I got told some words that would change my life forever. I was diagnosed with avascular necrosis of the right knee and was advised to do a joint replacement. The AVN was caused by me taking medications that were prescribed by my doctors since I was 5 years old — steroids for my asthma.

I agreed to the joint replacement, and my work life ended a year later. The horrible chronic pain and the psychological effects of that pain caused me to file for disability. As a young adult, I was told that if you work hard and things get bad, you will be OK. I had hoped to never need it. I was a workaholic; however, decisions by my parents and my doctors led me to get this disease, and this part is important.

You see, that working life has made my disabled life a living hell, no other way to word it. The state of Missouri has this thing with Medicaid called a "spend down," and its intention is to bring a disabled person's income down to the same level as someone on SSI, which in its base isn't horrible. I get it, make people the same. The problem is all the other benefit calculations that are done.

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Tatum Woods, a four-year-old from Vinton, walks through his home with the help of a special walker on Monday, Feb. 19, 2018, in Vinton. Woods has the rare genetic disorder known as Kabuki syndrome which leaves him unable to walk on his own. Kelsey Kremer/The Register

Tatum Woods, a four-year-old from Vinton, walks through his home with the help of a special walker on Monday, Feb. 19, 2018, in Vinton. Woods was originally denied the walker because his Medicaid provider would only cover a fraction of the cost but after many months and phone calls from both his mother and Total Respiratory & Rehab the company selling the walker he received the walker today. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory & Rehab makes adjustments to a special walker for four-year-old Tatum Woods, who has Kabuki syndrome and can't walk without assistance, on Monday, Feb. 19, 2018, in Vinton. It took multiple months for Total Respiratory to be able to provide the walker to Woods because his Medicaid provider would only cover a fraction of the cost. Kelsey Kremer/The Register

Tatum Woods, a four-year-old from Vinton, walks through his home with the help of a special walker on Monday, Feb. 19, 2018, in Vinton. Woods has the rare genetic disorder known as Kabuki syndrome which leaves him unable to walk on his own. Kelsey Kremer/The Register

Tatum Woods, a four-year-old from Vinton, walks through his home with the help of a special walker on Monday, Feb. 19, 2018, in Vinton. Woods has the rare genetic disorder known as Kabuki syndrome which leaves him unable to walk on his own. Kelsey Kremer/The Register

Tatum Woods, a four-year-old from Vinton, walks through his home with the help of a special walker on Monday, Feb. 19, 2018, in Vinton. Woods has the rare genetic disorder known as Kabuki syndrome which leaves him unable to walk on his own. Kelsey Kremer/The Register

Tatum Woods, 4 of Vinton, plays in a window curtain while working on standing and walking with his physical therapist Emily Tiedtke in his home on Tuesday, Jan. 30, 2018, in Vinton. Woods has a rare genetic disorder known as Kabuki syndrome which leaves him unable to walk without assistance. Kelsey Kremer/The Register

Tatum Woods, 4 of Vinton, rests on the floor near the end of his hour long session of practicing walking, standing and reaching with his physical therapist Emily Tiedtke in his home on Tuesday, Jan. 30, 2018, in Vinton. Woods has a rare genetic disorder known as Kabuki syndrome, which among many complications, leaves him unable to walk without assistance. Kelsey Kremer/The Register

Tatum Woods, one of a very small number of Iowans with the rare genetic disorder Kabuki syndrome, walks with the assistance of a hula hoop and his physical therapist Emily Tiedtke in his home on Tuesday, Jan. 30, 2018, in Vinton. Woods has outgrown a special walker he once used and cannot get new one because Amerigroup, his medicaid provider, will only reimburse a fraction of the cost. Kelsey Kremer/The Register

Tatum Woods, one of a very small number of Iowans with the rare genetic disorder Kabuki syndrome, walks with the assistance of a hula hoop and his physical therapist Emily Tiedtke in his home on Tuesday, Jan. 30, 2018, in Vinton. Woods has outgrown a special walker he once used and cannot get new one because Amerigroup, his medicaid provider, will only reimburse a fraction of the cost. Kelsey Kremer/The Register

With the help of his mother, Kristie Woods, and his physical therapist, Emily Tiedtke, four-year-old Tatum Woods, walks across his living room on Tuesday, Jan. 30, 2018, in Vinton. Kelsey Kremer/The Register

Tatum Woods, one of a very small number of Iowans with the rare genetic disorder Kabuki syndrome, laughs while his physical therapist Emily Tiedtke tickles him during an hour long session of practicing standing and walking in his home on Tuesday, Jan. 30, 2018, in Vinton. Kelsey Kremer/The Register

Tatum Woods, one of a very small number of Iowans with the rare genetic disorder Kabuki syndrome, reaches for toys while working with his physical therapist Emily Tiedtke in his home on Tuesday, Jan. 30, 2018, in Vinton. Kelsey Kremer/The Register

Without a walker or other assistance, four-year-old Tatum Woods, one of a very small number of Iowans with the rare genetic disorder Kabuki syndrome, crawls on his hands and knees to get around his home, Tuesday, Jan. 30, 2018, in Vinton. His mom worries that not having a walker that fits him will further delay his physical development. Kelsey Kremer/The Register

Without a walker or other assistance, four-year-old Tatum Woods, one of a very small number of Iowans with the rare genetic disorder Kabuki syndrome, crawls on his hands and knees to get around his home, Tuesday, Jan. 30, 2018, in Vinton. His mom worries that not having a walker that fits him will further delay his physical development. Kelsey Kremer/The Register

Kristie Woods, of Vinton, smiles at her son, four-year-old, Tatum Woods, as he reaches for the toys she's holding during a physical therapy session on Tuesday, Jan. 30, 2018, in Vinton. Kelsey Kremer/The Register

Kristie Woods, gives an interview on Tuesday, Jan. 30, 2018, at her home in Vinton. Her son, Tatum, has the rare genetic disorder Kabuki syndrome and needs a new walker after having outgrown his old one, but Amerigroup, his medicaid provider, will only reimburse a fraction of the cost. Kelsey Kremer/The Register

An old walker, outgrown by Tatum, a four-year-old Vinton resident with the rare genetic disorder Kabuki syndrome. He needs a new walker but Amerigroup, his Medicaid provider, will only reimburse a fraction of the cost. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory shows a photo of the walker Tatum Woods, a four-year-old Vinton resident with the rare genetic disorder Kabuki syndrome, has been approved to receive but will not be able to get because his medicaid provider, Amerigroup will only reimburse the company $575 of the $3,500 the walker costs. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory shows some examples of the kind of custom walkers, wheelchairs and other equipment they provide on Tuesday, Jan. 30, 2018, in Hiawatha. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory shows some examples of the kind of custom walkers, wheel chairs and other equipment they provide on Tuesday, Jan. 30, 2018, in Hiawatha. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory shows some examples of the kind of custom walkers, wheel chairs and other equipment they provide on Tuesday, Jan. 30, 2018, in Hiawatha. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory shows some examples of the kind of custom walkers, wheel chairs and other equipment they provide on Tuesday, Jan. 30, 2018, in Hiawatha. Kelsey Kremer/The Register

Jason Baedke, a rehab specialist at Total Respiratory shows some examples of the kind of custom walkers, wheel chairs and other equipment they provide on Tuesday, Jan. 30, 2018, in Hiawatha. Kelsey Kremer/The Register

For example, if you make approximately $1,200 a month, your spend down is approximately $300 a month, which for most of us we have to pay to survive. However, food stamps, Section 8 and other benefits use the $1,200 to calculate the income, not the $900 we are being forced down to. So in using this, the $1,200 person still has to pay $400 for their rent, whereas the $900 person may only have to pay $50.

Why? It's because once you are high enough for that spend down to kick in, none of the other benefits are allowed to take into account that you must use $300 of your income to stay alive and get the help you need. Do the math. At the end of the day, if you didn't work and you get all benefits, you will, for the most part, end up with more money left over at the end of the month than someone that worked hard, paid into the system and caught a bad break.

Now try to contact anyone about this, and you hear silence. Try to argue it, and you get told, "Too bad, just deal with it." You keep getting told, "No, it's not like that," even when you show the basic math. So what happens now? I am having to choose between life and death, food or meds when someone who never paid a dime into the system can buy new video games. How is that right?

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Hundreds of disability rights activists and others opposed to the Republican Graham Cassidy health care bill stood in line outside the Senate Finance Committee room Monday to show their opposition as a hearing into the measure got underway. (Sept. 25)
AP

When at the end of the day did we lose total humanity? Why is it not right for me to get the same health care as my peers or to have the same access to benefits as those whose income I am being forced to match? With this knowledge, I would rather someone from our so-called great government at least do me the dignity of answering my calls or come to my door saying, "You worked hard, thanks, but now you're better off dead to us than alive, and we will do what we can to get you there."

In a country where we are supposed to be more advanced, or the greatest or being made great again, why is it we cannot offer the most simplistic of human rights that countries one-eighth our size can offer: health care?

So for those in my situation, I hear you, I understand; for those that see what I am saying, we need to stand up and voice a change; and for those in government, if you are actually taking the time to read this and not the hundreds of other letters I have sent out, go back to school, learn math, don't discourage people from working and remember the most important thing: anyone that is your friend, family, loved one could have what happened to me happen to them.

I did nothing wrong — didn't drink, do drugs, just took what I was told and my world turned upside down. Would you want them making these choices, or would you want them afforded with the simple dignity of health care?